Tips from a CF patient
For anyone with a chronic illness, especially cystic fibrosis, the cost of prescription medications and finding financial help to cover them can be downright overwhelming. CF patients with limited income, who may be receiving Supplemental Social Security Income (SSI) or Social Security Disability (SSD), or working but barely making ends meet, face the dilemma of paying for the costly medications related to treating CF.
CF patient Dave, age 52, has “walked the walk” of coping with the disorder and says the good news is that CF patients now have resources that can dramatically reduce or even eliminate the expense of costly medications, excessively high co-payments, and out of pocket deductibles.
“In addition to NJSOCF’s special program, Pharmaceutical Services for Adults with Cystic Fibrosis, here are some pharmaceutical, state, and national corporate foundation grants that I have found helpful in lessening the financial burden CF patients face. I hope they can be of help to others in my situation,” he said.
Cystic Fibrosis Patient Assistance Foundation (CPFAF). This grant can cover most CF medications, including Tobi, Cayston, Pulmozyme, and enzymes like Zenpep, although usually limited to one or two drugs at a time. The application can be downloaded online at www.cfpaf.org. There are income eligibility limits, and income and insurance information must be submitted. The grant can be designated as a secondary payer, after insurance or Medicare.
Pharmaceutical Assistance for the Aged and Disabled (PAAD). This state-run program (partially federally funded) is designed to pay for almost all prescription medications. If income eligibility limits are met, an application can be downloaded online at www.state.nj.us/humanservicuces/doas/services/paad. Income and insurance information must be submitted. Once approved, you are issued a card that can be used at any pharmacy with a $2 or $7 co-pay for medications for most, if not all, conditions.
Patient Access Network (PAN). This pharmaceutical grant is provided through Genentech, the manufacturer of Pulmozyme. It is a single drug grant, with income eligibility limits, and the application can be downloaded online at www.panfoundation.org. This grant provides coverage for out-of-pocket co-pays that insurance of Medicare does not cover and can be designated as a secondary payer.
Patient Services Incorporated (PSI). This is a multi-corporate grant that covers certain drugs for over 25 different conditions, including CF. It covers Tobi, Cayston, and certain enzymes. Currently it does not cover Pulmozyme. The application can be downloaded online at www.patientservicesinc.org. There are income eligibility limits and income and insurance information must be submitted. This grant can pay out-of-pocket co-pays for up to two drugs and can be designated as a secondary payer.
“Finally, here is another tip,” said Dave. “If you need an expensive CF drug that is not listed above, you can visit the manufacturer’s website and usually find they offer some financial assistance.”
Dave said that in addition to NJSOCF’s Pharmaceutical Services for Adults with Cystic Fibrosis (PSACF), all of the above should be explored and used. Applications and eligibility requirements for the NJSOCF program are available at www.njsocf.org or call (973) 595-1232.
“When working with several different resources, the ‘out of control’ cost of CF medications can almost always be offset or eliminated with a little patience and perseverance,” he said. “I hope that one patient’s experience – mine – can help others with the constant juggling of expenses related to living with CF.”